When the hits just keep on coming

We had a phone visit with my GI a few days ago regarding all the recent chaos with the SIBO antibiotic, my new Long QT EKG adventures, and the general disaster I am in. Unfortunately there isn’t much he can do which is disappointing. And while he is probably one of the most intelligent and on the ore front GI doctors I have ever met, I often think doctors get pigeon holed and stuck in a one track mind.

See, when a doctor notices a trend over and over again, that’s what they are going to look for first. Like diabetes way back when type 2 was just being linked to poor diets or high rates of consumption of carbs and sugar. A lot of doctors who kept seeing this immediately jumped onto the “it must be diabetes” train. And yes I know this because, due to my PCOS, I am at an increased risk of developing pre-diabetes and having trouble loosing weight. I saw an endocrinologist just to check and immediately she was all over my diet not being correct and needing to loose weight. As a general note, at the time, I was a gluten free vegan…on organic only foods and cooking for myself, never eating out (still never had a pizza delivered). Not sure how that is exactly a “bad diet”. And to neither my or my fathers surprise, my labs and markers were all perfectly normal and healthy. Heck my cholesterol was perfect and the good cholesterol was in excellent range.

This exact same scenario happens in many Dermatologists who see 100 skin cancer patients a week. They can get a bit “scrape happy” as I call it, removing anything even remotely suspicious, but they are stuck in that rut, not able to think outside that box. Even my infectious disease doctor is on a Shingles kick. Everything is shingles. My dads allergic reaction- shingles. My two tiny finger dots- herpes or shingles (it’s neither…I asked my OBGYN who has seen it all). My new EDS scar that popped out like a hernia and hurt?-Shingles…

So when it comes to GI doctors, there is a rut. One size only for gastroparesis. Only problems with solids are a thing. You get the picture. Well my GI is stuck on the “SIBO causes most of the problems and if cured, your gastroparesis will improve. And If we add a laxative at the highest strength, then it will move your gut along and empty your stomach faster as well…” not exactly the case but okay. Their facility has seen hundreds of patients who are probably much healthier than I am and suffering from SIBO and when they get help, instant relief.

There’s also the IV benadryl debate among all my doctors (anti-nausea meds and pain meds too) because it is an anti-enemic aka it slows gut motility and being off of it will resolve things or improve them…except this problem existed well before any of my antihistamines or even IV benadryl was in the picture. Things got worse coming off my SSRI anti-depressant that I’d been on for a decade (this class of medicines actually treat gastroparesis to a certain degree). So you throw this into the mix and it’s a massive cluster. There is not anti-nausea medicine thats’ safe that won’t slow my gut, no pain medication to reduce the suffering because it…slows the gut, and the benadryl, of which the dose has been reduced, is apparently part of the problem even though it’s used in Gastroparesis to avoid stomach spasms after eating and prevent immediate vomiting/rapid emptying [something that happens in some cases where either nothing moves or when it does it just runs through without digestion].

So we are back to square one again. All tube options are out. At least we learned why: NJ (nose tube) can be thrown up easily; G or Peg tube only works if your stomach works but swallowing is an issue because it goes into the stomach…not helpful in my case; J tubes attach the the jejunum which is free floating intestines and tethering it to the skin for a tube results in lots of pain, adhesion, and even more problems, so they won’t even consider that one, the most ideal for me. Okay so we are back to the “is TPN or PPN, Iv based nutrition, an option?”. Nope. The monitoring is insane and with Long QT the IV inclusion of magnesium, potassium etc can be dangerous. Heck I have to watch out for milk of magnesia [part of my rescue meds for constipation] and monitor myself to avoid palpitations or dangerous problems…Let’s also toss in the dangers of a history of SIBO/SIFO in my gut and completely bypassing the gut for TPN would increase the risk of the bacteria getting out of my gut and giving me a line infection (Actually something no one has bothered to tell us before- this is helpful) and PPN- where you still orally consume some food- is so complicated and risky it’s rarely if ever done in a home setting.

So we are back to what the heck do we do nutritionally? Three words. Elemental Diet supplement. Also known as the worst tasting crap ever. It’s like licking dirt. But My doc wants us to mix that with my current boost style supplement, of which I might get 4oz a day down on a good day, to try and help. But again we circle back to my issue, liquids don’t move out of my gut. Pudding does apparently, but solids are sluggish and liquids slosh until I’m so nauseated I’m puking a days worth of fluid back out. And with zero anti-nausea measures, it’s a battle. It’s become so much of a battle my mother has some kind of internal sensor when she KNOWS the actual night time wont go well and can’t sleep until literally minutes before I start puking at 5-7am.

In case you need a laugh, our families level of exhaustion and dealing with this involves the following: Me going “oh shit I’m going to be sick”, grabbing a bucket next to my bed and hollering into a baby monitor. My mom half falling down the stairs in a medication induced trance trying to find me in the dark, the milk, and make sure I’m not choking all at once. And my dad stumbling down half dressed and confused where he needs to be and needing to pee. There’s bucket swapping, back banging to clear my throat, the great search for cold pudding if there is any, an eventual rush for digging out ice cream in a pull out freezer with a broken door, and a mad scramble for headbands, saline for my nose, tissues, towels, and the ever present “catch the fainting jessie before she falls off the bed”. We don’t need a script writer for the comedy level we have. My poor dad ran into his door the other night and caused a huge crash trying to get down the stairs to me…which caused my mom to startle up and run to him, me to get startled and faint then puke more, and a bruise for dad.

But back to the GI. He’s pretty sure this is autonomic neuropathy that is progressing through my system yet there is no way to measure it exactly and it’s barely understood. No one is specializing in it because no one knows how or why it happens or how to measure. There isn’t a GI in the country even looking into it, and yes he has searched for one. Neurology-GI doctors kinda aren’t a thing. They only overlap with vagus nerve damage where the damaged nerve is impacting the gut. But it stops there. No one wants to do two long residencies of two things that apparently rarely overlap. Although this is about to change.

To make the hits worse- there is currently NO ongoing research, medical professional, expert, or even a test in development that is looking into progressive autonomic neuropathy and how it impacts the gut and other organs as well as there is zero treatments even in the pipe line. The only thing they know, it can progress through the system and impact the gut and eventually the heart and other organs. Why? We aren’t even sure. IVIG is currently the only neuropathy treatment but it’s exceptionally controversial because it’s hard to see if it actually works (lack of ability to test that), no way to monitor the intensity of results, and no way to know if it’s a life time thing or not. But in terms of change…COVID has caused a sudden massive uptick in dysautonomia cases, POTS patients, and even MCAS cases. It’s FORCING doctors to start looking further and deeper because now this “exceptionally rare, just live with it because you’re a complicated patient” is becoming “not as rare and here are a bunch of no health problem folks suddenly with it”.

Okay so there is hope…kind of. When something shows up in health folks in droves…THEN suddenly everyone’s interested.

Just to toss in extra goodies since I started writing this, remember those fun Brachy episodes I mentioned? Where my heart rate would bang up and down 90s to 60s, I can’t stay conscious, but no doctor seemed worried since its “normal range”? Yeah, those got worse. They now last an hour and we can’t seem to associate it with anything except sitting up for a while or that it’s usually at night. Except I’ve had them during the real day time. At This point my mom has pushed for a cardiac monitor for them to see in real time what happening and hopefully catch these episodes. Part of me thinks it might be hormone linked or maybe blood sugar. We have to lay me down and throw my legs up or wrap them in compression and force honey and cookies down my throat to try and pull my heart rate out of the 60s and keep me conscious (literally the only positive of gastroparesis at this point is it doesn’t allow sugar crashes because it can’t digest those fast sugars actually fast). The vision goes, there are swirly lights, my body goes numb, words slur, my chest aches like I’m being stabbed, and it’s apparently “nothing to be worried about”. Nothing my ass. You live through it. I’ve lived with my heart rate in the 100s for over two years, then the 90s, then 80s where we stabilized with minor bouncing. But my body isn’t healthy or functional enough to somehow work at 60 beats a minute. And throwing a medicine to possibly stop the fainting at me but is also an anti-anxiety medicine that LOWERS THE HEART RATE AND IS EXTENDED RELEASE sounds like a terrible idea. Standing me up doesn’t work very well either. Eventually, an hour in, my heart rate will stabilize in the upper 70s low 80s and stay and then it’s like it never happened, I just ache all over. So even more chaotic clues into the never ending mess that is me.

At the end of the day the long and the short of it is this: I’m still a disaster, we just don’t have a plan anymore and are limping our way until February at Vanderbilt’s Autonomic Function Center in the hope they’ll be able to figure out something or maybe come up with a better plan. We’ve moved my beta blockers and benadryl around some. I’m still not sleeping well and exhausted, and honestly can’t wait for my period to come just so I might get a break from all this and only have to handle horrifying pain. Because let’s get real, no one will treat the chronic or acute pain, no one can get the nausea under control, and until those two suckers are managed and my heart is managed, I can’t do Jack shit. I’d love to be up and walking, even if I’m fainting every 15 seconds, or maybe rolling around in the wheelchair trying to do something, but even that triggers disasters.

So until next time, where hopefully there is better news, stay strong my friends.